A journey of life with Deafness,Cochlear Implants and a mitochondrial condtion.

Welcome To My Blog...

This blog follows my journey of 2 different cochlear implants and my condition: Multiple mitochondrial DNA deletions I have started this blog 15 yrs too late but ill try my best to fit it all in! I have packed a lot of medical jargon into my life since I was 8.

There has been happiness and tears but I've come through it all with my family and my friends.I'm profoundly deaf as a result of a condition called Multiple mitochondrial DNA deletions or mitochondrial disease RRM2B as my professor Sir Dough Turnbull calls it! I have had since birth but I didn't find out this til I was 19. I have had 2 cochlear implants (at the age of 8 and then i lost the 1st cochlear implant in my right ear after 7 years due to a bad, accruing ear infection (which I couldnt fight off because of my mitochondrial condition) at the age of 15 and had a 2nd one implanted in my left ear that same year which I have now.

My Story

26 March 2012

Newcastle 2012....

Sunday Me and the parents made our way up north on sunday we stopped off at Middlesbrough to see my nana and family. My cousin is expecting a baby so we gave him some gifts for the baby my nana gave me a tenner in pound coins bless her haha then after an afternoon with the family we left to set off to Newcastle where we would stay at a premier inn overnight we brought syringes to flush my peg and a dry box for my cochlear implant i used disposable batteries so i didnt have to bring the recharger up. We went to the pub connected to premier inn and i had a lovely fudge cake and a cola and my parents had their meai i then went to my hotel room while parents stayed in the pub having a drink i watched dancing on ice final then my parents came back to the room and we went to bed after coffees and tea at 11pm. Mum said it was the best nights sleep i had at a premier inn i always got up to go to the toliet or would'nt sleep normally but i had a full day visiting family so i was tired out!!

MondayWe got up got dressed and ready with snacks for the long day ahead of us and we drove to the hospital and parked in a disabled spot. The first port of call was going to the cafe to get a cup of tea and meet jonathan the guy who helped me make the decison to have the brow suspension and we had a chat

Me and jonathan

I then went on to the day unit neurology where we met Professor Doug turnbull with a meeting with dietitian and junior doctor and we discussed how i was getting on with my life as i was quite depressed and down the dumps last time i was up there so he was happy to hear that i was more cheerful! We discussed the PEG feeds and that now im a healthy weight and eating orally, he wants to me to stop the feed overnight as he worries that i would get reflux (sick ) and cause a chest infection which we dont want.(pnuemonia and septisemia nearly killed me) nstead he wants me to use a syringe to put the feed through the PEG on a morning as thats all i need. We discussed exercise and how it is helping but i must pace myself and not overdo it. i have to know my limits. Doc Turnbull also asked to see my cochlear implant and was surprised to hear that they go back as far as 1994 and that ive been implanted for 17 years now!

We also noted our problems we may have when the benefits finally get round to us and our interview as we were very worried they would take our benefits off us and send me out to get a job when im really not fit enough to have a job. Doc Turnbull reassured me that i would not have my benefits taken off me as im a genuine mito patient who cant work as i get so tired one day and fine the next so how can i work ?

We have heard stories that if you can lift your arms up a certain height or walk a certain length of time you are fit for work!! so we voiced our worries to Doc Turnbull on this and said he would write a letter to the highest person in the benefit unit that i am not fit to work because i have a mito condtion so we were pleased and reassured about this.

We discussed the patient information day and i said i would be intrested in coming and meeting some other mito people and going to workshops as well as talking to doctors in mito. I will meet jonathan and susan Warwick and Faye Wiley if they are sitll going.

I went to get a blood test and they took about 6 vials of blood ill get the results in a letter

Me with Professor Doug Turnbull

We went on to the eye department to see Patrick who takes over from Mr Griffins who did my original brow suspension. We discussed how the cysts had keep coming back on the left eyebrow and that the doctor who removed the cyst at huddersfield didnt want to do anything further til i came to newcastle as thats where i had the brow suspension. Patrick looked at my eyes throughh an eye machine the kind you get at optitians and he wanted a second opinion from a plastic surgeon so we had to wait half an hour before he came and then he had a look at where the cyst had been on my left eyelid and the overall brow suspension and he said its worth taking the stitch out as its irritating the skin so the cysts will keep coming back. So he wants to take the sillicone tube out in 3 months time and then redo the brow suspension when the eyelid has healed. He said its the only way round it so i was prepared for some kinda op or procedure that had to be done to get rid of the cysts.

The waiting list is 3 months so it will be june time he said the eyelid would droop a bit since the silicone isnt holding the lid up but the doc said he can redo the brow suspension on the left eye again when the eyelid has healed so thats ok im prepared for that. Nothing ive not gone through before!

He also gave me some drops to take 6 times a day to lubicate my eyeballs and how to clean sleep from the eyelashes with a cotton bud. He wants me to carry on with the hot compresses and the microwavable eye conrpress.

We were then free to go home and we were starving as we hadnt really had anything to eat all day apart from a bite to eat at the cafe before all the appointments! So we went to McDonalds for a a bite to eat I had a happy meal with a beef burger n chips which was yum!!

I saw a lovley sunset while we were driving home ill put pics on another time as they are on my phone!

So thats all the news from Newcaslle for a yaar well until the patient information day in April that is! That will be good to go to meet other people who have a mitochondrial condition and support etc